‘One wants to know what a chromosome is’: the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder

Abstract

The internet has democratised access to health and diagnostic information, enabling patients to mobilise social support from peers and advocate their interests in encounters with medical personnel. Research has shown that these possibilities are particularly important for patients and caregivers confronting a rare medical condition. However, little research has focused on how the act of searching for and accumulating information via the internet can be important for coping emotionally with a situation characterised by uncertain prospects and inadequate information from health personnel. This paper explores the experiences of 10 Norwegian parents whose children have different rare genetic disorders and who used the internet as a resource. The analysis draws on the theoretical framework of the medical sociologist Aaron Antonovsky, who emphasises people's inherent ability to manage extremely stressful life experiences. Analysing the process of adjusting to and coping with life parenting a child suffering from a rare genetic disorder, this study shows that becoming knowledgeable about a child's condition is essential for gradually comprehending and managing a situation that initially seems unmanageable and distressful. It also suggests that as parents adjust, so do the frequency and purpose of their internet searches.